Last month saw the 10th anniversary of the death of Jonny Kennedy. For those of you who have seen the documentary ‘The Boy Whose Skin Fell Off,’ we don’t have to remind you who Jonny was. For this who didn’t, we can not recommend this documentary enough. It is the tale of 36-year-old Jonny, he is living with Dystrophic Epidermolysis Bullosa (EB). In 2003, Jonny decided to work with filmmaker Patrick Collerton to document his last months in an uplifting, confounding and provocatively humorous story.

Although it never shies away from the reality of his illness, this moving film is a celebration of a life lived to the full. Whether chatting up Nell McAndrew or choosing a coffin with a surprising baked-bean can motif, Jonny displays a devilish humour, an acute intelligence and an unwillingness to suffer his fate, or fools, gladly.

When it was first shown, The Boy Whose Skin Fell Off captivated nearly five million viewers and helped to raise £500,000 for the EB in the UK. His story was recently voted no 6 in the Channel 4 Top 50 documentaries of all time.


To watch the documentary, click here and let us know what you think after.